Professor Sue Black OBE is understandably bitter. Last year, she was a candidate in the London Mayoral election, standing for the Women’s Equality Party, when that bid had to be cut short for health reasons, following complications from a ‘simple’ operation she’d had more than 15 years earlier.
‘I’ve been completely debilitated by a procedure which would never have been used if the patients were men,’ says Professor Black, one of Britain’s most eminent mathematicians and computer scientists.
It’s been a shattering blow to a woman who is no stranger to adversity, having lost her mum at 12 and left school at 16 with few qualifications.
The scandal is that she’s one of thousands of women who have suffered as a result of the same operation: using a type of surgical mesh known as tension-free vaginal tape (TVT) to treat incontinence and prolapse.
Up to 40 per cent of mothers experience these problems post-childbirth. TVT was introduced more than 20 years ago as an alternative to more complicated (and costly) repair surgery: the TVT procedure costs less than £1,000 and is carried out as a day case compared with three nights in hospital for the traditional approach.
While the mesh has been problem-free for some — shockingly, we don’t know the true numbers of those who have had the surgery, because there is no official count — as many as 8,000 British women, but potentially up to 100,000, have been left permanently injured after the hard plastic material disintegrated inside them, slicing into the soft tissue it was designed to hold in place.
In many cases, the implanted mesh have become embedded deep into the woman’s reproductive organs, causing chronic infection, excruciating pain and nerve damage.
Some have been left unable to work or even walk and are now in wheelchairs. The mesh has also destroyed sexual function, causing marriages to fail.
In one tragic case, Canadian Chrissie Brajcic, 42, died from sepsis as a result of antibiotic resistance brought on by repeated efforts to treat infections caused by the mesh.
Reports to the U.S. Food and Drug Administration, which regulates drugs and medical devices, indicated up to half of women who’d received the mesh had some kind of complication.
For years, those affected were often dismissed, told by medics that their symptoms were ‘in the mind’.
A campaign by the Mail led to the establishment, in 2018, of a review into the mesh, led by Tory peer, Baroness (Julia) Cumberlege.
Next Wednesday that report will finally be published, but campaigners fear it won’t go far enough.
The Mail has learned the report will call for the establishment of a network of seven regional centres staffed by urologists, gyn-aecologists, colorectal surgeons and pain
specialists, able to perform the intricate surgery involved in removing the mesh.
It’s also expected to call for a mandatory register of all mesh operations and details of any woman undergoing it, although insiders have been told this could take three years to set up and it won’t be retrospective.
Although the mesh has been banned elsewhere, including Australia and New Zealand, here regulators have only agreed to a ‘pause’ in its use. The report is not expected to extend this to a ban.
This means that the procedure could still be offered if a register is put in place.
While welcoming the setting up of specialist removal centres, as well as a central register, campaigners are dismayed that the failure to ban the mesh has only awarded them a partial victory.
‘I’m extremely disappointed as I wanted to put all this behind me. Although it will be difficult for surgeons to offer the mesh because there’s no register, I think we will have to keep our campaign going because there will be surgeons itching to start using it again,’ said Kath Sansom, who set up the pressure group Sling The Mesh (which has 8,000 members) after her own problems with it.
She had the mesh implanted in March 2015 to correct mild incontinence following the birth of her two daughters (13 and 18 years before) and, like so many others, she suffered problems.
Although she got the mesh removed after just six months, the damage was done. ‘I was in pain as soon as I woke up from the anaesthetic,’ she says. ‘I used to do high board diving, mountain biking and ran my own photography business. I’ve had to give up those things and I will probably need regular specialist physiotherapy for the rest of my life because of the pain,’ says the journalist, 52, who lives in March, Cambridgeshire.
Annette Powers, 58, a former occupational therapist, has suffered similar damage and thinks the mesh should be banned. The mother-of-two from Stilton, Cambridgeshire, struggles to walk for more than a few hundred yards after having the mesh inserted in 2002. After 16 years of chronic and painful infections, she had some of the mesh removed, but the stabbing pains have returned.
‘The infection has obviously come back,’ she says in despair. As for Professor Sue Black, she has been anxiously waiting for the report. While broadly welcoming it as ‘good news’, she says she is unsure of what longer-term changes it will bring. She remains concerned about safeguards for medical treatment for women.
Over the course of the Mail’s nine-year campaign for the mesh victims, we have spoken to around 100 women whose lives have been ruined by TVT about the humiliation and intimate agony implanted mesh has caused.
Among them have been peers of the realm, politicians and senior professionals, but none of them has been willing to be quoted.
Professor Black, who successfully led the call to prevent the closure of Bletchley Park and has been a guest on Desert Island Discs, is the highest profile woman to go public about her own experiences.
Until recently, Professor Black, 58, was planning to run for election as the mayor of London. Among her proposals was a plan to establish a women’s health research centre and address poor regulation of medical devices.
Now she has fallen victim to the very problems she was intending to highlight.
‘I’m normally energetic, but I’m just not strong enough to do this at the moment. I normally walk a lot and go swimming and I can’t do any of that, never mind campaign for mayor,’ she says.
‘One of the reasons why this has gone on for so long is that we have a blind faith in the medical profession and the last thing anyone wants to talk about is their vagina or incontinence. The industry has relied on that fact to keep all this quiet.
‘I didn’t want to talk about any of this either, but reading all the stories of these injured women, I felt I have to.
‘I’ve had a relatively lucky escape: the advice women have been given, the nature of the advertising of the mesh (that it was risk-free), and the stories of doctors offering only counselling for extreme pain, telling families their mum’s making everything up or is mentally ill, is truly shocking.
‘This procedure has been quite barbaric and the fact it’s been happening for 20 years or more is even worse,’ says Professor Black.
Her own problems started after the birth of her youngest daughter in February 2004. ‘Straightaway, I knew something felt wrong. I’d had stress incontinence before, but it was manageable until then.’
Her GP sent her for physio, but then she was referred to a gynaecologist. ‘He said my options were the old-fashioned three-hour pelvic repair operation using my own tissues, which he said meant I would have to stay in hospital for several days and take several weeks off work, or there was a new “gold standard” operation, where I would be in and out in a day.
‘He explained it as a tape and showed me diagrams. What I didn’t know then, but know now, is that the surgeon has to guess where to put it. That is why they so often put it in the wrong places.’
She had the surgery in 2005 at the age of 42. ‘I was fine after. I was fit, I did park runs and went to the gym. I was delighted as the operation cured the incontinence.’
However, Professor Black, who is married to Dr Paul Boca, 51, an IT consultant, found the relief was temporary. ‘By 50, I started going into menopause and I thought the symptoms were to do with that. I also developed tiny raised hard purple lumps on my body.’
The mesh — a foreign material inserted in the body — can cause allergic reactions as the immune system tries to reject it.
‘My face started to get puffy and I found I could only pee if I sat on one side,’ she says.
‘About two years ago, my sister read an article about mesh and said it could be the problem, but my GP said she didn’t think it had anything to do with it.’
After insisting on further investigations, Professor Black eventually had most of the mesh removed in August 2018 by a specialist, thanks to her husband’s private health insurance. It was impossible to remove all of it, because it was embedded.
‘After that, the lumps went within a week, my face didn’t look puffy and I could pee normally.’
She knew more surgery would be necessary to remove the rest of the mesh, but was not banking on a further operation to remove scar tissue caused by the 2018 procedure. This second, hour-long procedure took place in 2019.
‘The day afterwards I fainted in hospital and lost blood because of post-operative bleeding. That led to me becoming anaemic and getting a series of infections.’
After six courses of antibiotics, she is still facing a third major operation which will involve two months off work. ‘It’s all fairly traumatising,’ she says.
Explaining her decision to speak out, she says: ‘If this mesh thing had happened 20 years ago, I would have been too shy to talk about it in public, but you get more confident with age.’
This year the Government introduced a new Medicines and Medical Devices bill to give faster access to new treatments. However, there is none of the detailed testing required for new devices which is needed before a drug is approved.
‘For the Government to create a situation where less regulation is in play so these things can get to market quicker, is indefensible,’ Professor Black says.
‘Women’s health considerations are poorly researched.
‘We need better safeguards for medical treatment on women, including mesh.’
VICTIMS FACE YEARS WAITING FOR SURGERY TO REMOVE FAULTY IMPLANTS
Seven years ago, Corinda Daw, 53, underwent an NHS operation for mild incontinence using TVT, a procedure her surgeon said would take 20 minutes and work for ever.
Instead, the married mother-of-two, from near Harwich in Essex, was left in agony, unable to urinate and with her sex life destroyed as the tape ‘strangled’ her insides and migrated into her bladder.
Corinda had to wait 16 months just to join an NHS waiting list to have the mesh removed.
According to one expert, it will take about 20 years to clear the waiting list of women who need the surgery.
Trapped in pain, Corinda could endure no more and, last August, she used her husband’s pension to pay for private surgery to remove it.
Corinda, a sales consultant, had been referred for the TVT surgery after seeing her GP about the mild incontinence when sneezing and coughing.
The urological surgeon she was sent to said she was a perfect candidate for a TVT. ‘But as soon as the operation was over, I found I could not pass urine,’ says Corinda, who had to use a catheter. ‘I was in agony from pelvic pain.
‘It was five months before I could pass water naturally. But it has never been right.’
Her sex life also suffered. ‘I had no pleasure sensation, only pains like a chronic urinary infection,’ she says.
She had no idea what was behind her symptoms until three years ago, when her husband Martyn, a harbour-master, read a feature on mesh injury in the Mail. ‘He thought, “That sounds like my missus”. ‘I read it and thought the same, so I went to a new GP and asked for a mesh removal operation.’
It took ten months to get to see a consultant who told her to expect a wait of another three months for an operation date.
But no appointment came. Corinda’s recently retired husband then suggested sacrificing his pension pot for a private mesh-removal op.
The NHS waiting list has driven many women into private surgery, says Sohier Elneil, a consultant urogynaecologist at University College Hospital. ‘I have known women to take second mortgages or cancel holidays of a lifetime to fund ops,’ she says.
Corinda underwent the three-hour surgery, at a cost of £10,000, at the Spire Bristol Hospital. The surgeon found the mesh had attached itself to the inside of Corinda’s groin and migrated into her bladder. ‘There was 27cm of the stuff strangling my organs,’ she says. ‘The surgeon said it would have caused more damage over time. Three days after the op, I cried with relief. The pain had disappeared and I could pass water easily.’
But Corinda fears her sex life will never recover: ‘The mesh took away the feelings a woman should have, a cruel price to pay for treatment for mild incontinence.’